You have health insurance. Great. Where can you go for cancer care?

Thanks to the Affordable Care Act (ACA or Obama Care), we no longer have to worry about being denied health insurance because of preexisting conditions or that we will lose our coverage because the total cost of our care has reached spending limits. So, we now have health insurance plans that we can “afford” and as long as we pay the premiums we can keep them. Wonderful.

But, do know where you can go to get health care?

While we now have health insurance where we can go for health care is a totally different story. A story surfaced again this week that points out that care at renowned cancer centers may not be covered by your insurance plan. This report, by the Associated Press, reveals that only 4 of 19 nationally recognized cancer centers are covered by all of the insurance plans in their state.

The 19 hospitals surveyed are all part of the National Comprehensive Cancer Network (NCCN), an alliance of 25 of the top cancer centers in the world. The NCCN creates numerous guidelines that help physicians around the world care for oncology patients but evidently they may not be good enough for your insurance company.

How can this be? Well, we can select a health insurance plan that we can “afford” but the hospitals that are in the plan may not the top hospitals in the country but rather the ones located next to Chico’s Bail Bonds. I say, enough of the Bad News Doctors that we are directed to by the drunken pool cleaning insurance companies.

The cancer care health insurance solution

The ACA (Obama Care) should mandate, at a minimum, that any insurance policy written in the U.S. has to cover care at any of the 68 National Cancer Institute (NCI) NCI-Designated Cancer Centers.

The National Cancer Institute (NCI) is part of the National Institutes of Health (NIH), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). Since the HHS runs Obama Care then this solution should be easy to remedy. If Obama Care mandates other coverages (such as, pregnancy, birth control and mental health coverage) then why couldn’t a quick change of the rules by President Obama change coverage mandates for cancer patients?

Why is access to top cancer centers important?

Testicular cancer is a perfect example of why access is so important. There are more urologists and medical oncologists in the U.S. than there are cases of testis cancer each year. This means, statistically, that not every urologist or oncologist would even get to treat a new testis cancer patient every year. Think of skills or things that you only use once a year. Do you consider yourself an expert at these tasks? Well, perhaps neither are the doctors that only see one new testicular cancer patient.

There are doctors that are experts in testis cancer. They have dedicated a large portion of their career to advancing the treatment of this disease and see numerous patients a year. However, these doctors are not next door at the “I Try Hard Hospital” but rather at larger centers of excellence. Their volume of patients seen helps increase the quality of their outcomes. Higher volumes and better outcomes is not something new and has been shown to correlate in other disease states such as cardiac surgery.

These larger centers are also where the cutting edge clinical trials are being conducted and by denying coverage at these centers the insurance companies could be denying access to needed clinical trial participants. There is an Obama Care clause that mandates that insurance companies have to cover the routine costs of clinical trials but discussion of this is beyond the scope of this piece.

The point is that access to care to these incredible facilities and doctors should not be denied or even hindered by plans confined behind state lines. A change of the law to cover all NCI-designated cancer centers would be a start. Ideally, means of determining centers of excellence for individual disease states should be developed and coverage at these centers should also be mandated down the road.

If my cancer returns, I would certainly want to drive the two hours from Cincinnati, to be seen at Indiana University. If I am willing to travel there on my own dime then why shouldn’t my insurance company cover that care? After all, incredible outcomes occur under the care of these doctors.

Care at Top Medical Centers is More Expensive

Maybe my care at Indiana University would more expensive than care at the “We Try Hard” hospital down the street. I don’t even know where to start to compare the charges as most of the financial data I’ve seen in health care is derived from Medicare data that mainly applies to patients 65 and older. I have yet to find data for younger testis cancer patients, data that should easily be obtained from the insurance companies themselves if they had a national database or willingness to release and share the information.

Perhaps the care I received would be cheaper if there were less adverse outcomes associated with care at Indiana University. Some data suggests that outcomes are better and adverse effects are lower when retroperitoneal lymph node dissection (RPLND) surgeries are conducted by higher volume surgeons. Indiana Is certainly a high volume center.

For the sake of argument, let’s assume that the cost of care at Indiana University is a bit higher than that of a local facility. So, my insurance company loses if I go to Indiana right? No, they don’t!

A reasonable additional cost of care is certainly worth the benefits so we shouldn’t be denying care based on the cost. Ideally, we should base our care on physician excellence and excellent outcomes but even that system has it’s faults as doctors and hospitals might be more encouraged to deny treatments to the sickest of patients and refer them somewhere else instead. For example, after public quality data reporting for cardiac surgery was instituted in New York there appeared to be an increase in the severity of sick patients being referred to Cleveland Clinic for heart surgery. The thought is that facilities could keep their quality scores looking good if they referred their sickest patients to other states that did not have the quality reporting in place.

There is plenty of room to debate for the perfect system and scenarios but here is one thing that needs to be done now: The ACA (Obama Care) should mandate, at a minimum, that any insurance policy written in the U.S. has to cover care at any of the 68 National Cancer Institute (NCI) NCI-Designated Cancer Centers.

As cancer, or any other life-threatening disease, patients we do not have time for political debates and insurance appeals. If a federal entity, such as the NCI, designates caner centers then, at a minimum, those centers should be good enough for any insurance company to cover our care in those facilities. We can always improve from there and let’s hope there are many more John Clelands.

14 Responses to “You Have Health Insurance But Can You Get Health Care?”

While I won’t dispute that getting care at one of the top cancer centers can be important for many patients, for those who can’t afford it (and can’t get their insurance to cover it) a good option to avoid having to go into debt might be a local university hospital. I had my surgery and all of my chemo and followup blood work and CT scans at Los Angeles County/USC General Hospital and, in spite of the fact that I would have been bored out of my mind if I hadn’t brought a laptop with me (there was no TV, radio or even phone in my room) the care I got there was excellent. The doctors who treated me had not only been treating cancer, but also teaching others to treat cancer, for years. Having medical students (with my permission) come in to review my charts, ask questions and discuss my case with the more experienced doctors was nice too since I was contributing to their education in a way that might save more lives down the road.

Just want to add (since I can’t edit my previous comment), LAC/USC being a county hospital also worked with me to keep the costs down since I was uninsured at the time, most of my treatment was covered by a county outpatient program they helped me sign up for. Thanks to the doctors and nurses there, and the fact that I caught my cancer fairly early, I’m going on 8 years cancer free this Halloween.

Congrats on being a fellow survivor. You advice is much appreciated and you are correct in that there are options for being treated and when it comes to costs and access to care. Local university or teaching hospitals many times will have an oncology clinic or urology clinic that guys can go to. The thing to keep in mind with many of these experts is that they are familiar with little nuances in the care of testicular cancer patients and centers that see more patients tend to have better outcomes and this is seen in other diseases as well. The other thing to keep in mind is that some of these experts will have an initial consult with you in person and then follow you from a distance, allowing you to receive care in your local area.

We don’t have insurance and the University was significantly more expensive, but they are one of the best places to go–I used to work at the University–I’d recommend them to anyone unless budget is an issue. Where my husband is being treated is wonderful. The surgeon, who is from another practice, was very difficult to deal with and had a wretched bed side manner–especially for someone who is dealing with cancer. When time is of the essence it is difficult to locate the best facility or doctor and seemingly when emotions are high it is the worst time to try and sort through insurance and hospital issues. This article and all of the information on your blog and website has been incredibly helpful in navigating these rough waters! We are still without insurance, but thankfully the doctor is willing to work with us. We are all about using natural methods as well to help with the healing and prevention–our doctor wasn’t on board with that at first, but has grown to accept it and now even asks us about the information–that’s encouraging.

I know that I ran into the issue of where I could go that my insurance would cover expenses. My home town hospital as a urology department but I never got a chance to see if that doctor would except my insurance. He was on vacation at the time I needed to see him and he wouldn’t be back for a week. One of our ER doctors gave me a pamphlet with a list of other urologists ranging from 45minutes to 3 hours away. I choose a group of urologist that were 45 minutes away and, when I got there and filled out ALL the paperwork, the receptionist told me that my insurance was not accepted there due to the fact that they have had previous patients that the insurance company hadn’t paid for yet and that if I wanted to continue on my own that it would cost me several thousand dollars. Mind you I just found out early that morning that I had testicular cancer so I was not in the mood to hear that my insurance would cover that doctor. The receptionist was nice enough to call another urologist that did accept my insurance. The only problem was, I had to travel another 2 hours away to see him. After thinking that I had got everything cleared up with insurance issues after my surgery, I found out that I had to change yet again to have my treatments done. Fortunately, I ended up being able to see my hometown urologist. I guess what I’m trying to say is, the insurance companies and government are all for accepting our money with no questions asked but when it comes to cancer patients, or others with life-threatening issues, needing help to save our lives, they don’t want to pay a single penny.

I think having the option to be treated at a cancer center is fantastic. At the time I was diagnosed I didn’t have great insurance and was treated at my local hospital and everything was great I’m almost at my 6 year cancer free mark.

I thought this was a good read. I was treated at my local hospital as well and I’m a 2 time testicular cancer survivor. I ended up going to see Dr. Lawrence Einhorn for my final all clear and I’m now almost 20 years cancer free.

I was very privileged to have an insurance package that covered both the university hospital and most of the private hospitals in the area. I went with a private hospital in the end because the urologist who handled my orchiectomy felt that I would be in better hands with an oncologist at another institution with more experience treating TC. Overall, the costs were pretty similar for treatment and I went with the private hospital because the oncologist there seemed more experienced. I spent most of the time I was sick and quite some time afterward terrified that I was not going to be able to find insurance or get treated once I survived. I am eternally grateful for ACA.

I think having the option to be treated at a cancer center is fantastic. At the time I was diagnosed I didn’t have great insurance and was treated at my local hospital by my urologist and everything was great I’m almost at my 19 years cancer free mark.

Ive been having trouble in California. After moving back from iowa who has no help in insurance if you have zero cash flow. Now i have medi-cal and its the lowest of the low. Its a stigma drs seem the perpetuate. It doesnt feel that im getting the care i deserve since i cannot work.

I am so glad that you guys are doing great. My hubby is 6 months cancer free after chemo and orchiectomy. But the only gripe I have is that I have great insurance that takes 1/3 of my paycheck, and I am still 10,000 I the hole and still climbing because he has a port that needs flushing ever 6 weeks at 3 hundred dollars a hit for the next year or 2 until he gets a full year clear CT’s. Those I also have to pay thru the roof for every 3 months. Insurance should not be so expensive if it isn’t even covering a quarter of the services rendered. But.. I will say to the teaching hospital aspect, Lahey Sofia Cancer Center, the nurses have been phenomenal and the doctors have been ok, too. But there have been many things that I found on-line for myself that his doctors didn’t tell us. I feel like there isn’t enough help. Sorry this was so long. But All’s well that ends well; so we take it as it comes and learn to appreciate life and pay what we can and let a Higher Power take care of the rest. May the joy of the Holidays be with you all, all year and hugs to all you guys for being cancer-free!!

Assuming your hubby had full-dose chemotherapy there are a few things that you could consider. One, the port may not need to stay in place for that long. I am not sure why your doctors are wanting to wait for a year or two to remove it. Perhaps you could get a second opinion, even from a testicular cancer expert. Here are some suggested contacts from our friends at the TCRC http://tcrc.acor.org/experts.html If the doctors refuse to remove it then perhaps make a fuss and insist they pay for the maintenance and flushing. As far as the CT scans, having them every 3 months after chemotherapy may be unneeded so perhaps they could be done much less frequent. Again, you can get a second opinion. You can also shop around for cheaper options for CT scans. I hate to use the words shop around but your insurance provider may have prices for their local providers or you could also find a cheaper place and pay cash. Here is an article on the variation in pricing: https://www.nerdwallet.com/blog/health/procedure-costs/how-much-does-a-ct-scan-cost/ and https://healthcarebluebook.com/page_Default.aspx may give you some info too. Basically, you want to do whatever you can to prevent cost from affecting lapses in care but some of the things you mentioned may also be overly aggressive as far as needing to have them done. I hop this helps.

between the article and everyones comments, I have learned so much in about 20 mins. Everyone needs to read through these comments, there is so much useful information. Thanks Mike for taking the time and posting this and motivating us to speak up.

It’s both bitter and sweet that it never got this far with Shane. However, I would have moved heaven and earth to get him the best treatment available.

I am currently fighting with my insurance company (through the ACA), for cancelling my insurance mid-month when Shane passed away. (They didn’t cancel the day he passed, they decided to end my coverage the day before my son was born – then restart me new coverage, new deductible, with a new policy number…it’s a mess, huge mess). But that doesn’t pertain here.

Thank you for the wealth of information you make available to those in need.